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@rselbie, I want to welcome you to Connect. Am I correct to assume that you have been taking Prograf for 18 years for a successful liver transplant? You are to be commended for taking good care of your precious gift. I am 13 years with my beautiful transplanted liver and kidney, and I am also feeling some of the effects of aging. I don't know if your Prograf is the culprit, but it does sound like your doctors have ruled out lung and heart issues.

I feel that I need to update my original post that was written 2016. At that time, my Prograf/tacrolimus dose was changed at the same time that my prednisone was reduced. (I don't think that was good timing, it only complicated things. ) The Tac was raised because of a series of low readings. Coinciding with that was when the transplant team, (based on research) decided that I was a candidate to eliminate the 5 mg daily prednisone. Like you, I was tested by pulmonologists and cardiologist with everything coming back normal. My Tacrolimus was restored to normal level, and the difficult breathing continued. it was my pulmonologist who diagnosed me with an exercised induced asthma. My pre-transplant hiking/breathing history were his reason for this assumption. He says that the prednisone had probably kept it hidden and under control. My experience is that it is brought on by allergies in spring and fall, by humidity, and by exertion. A solution for me is a daily prescription of Montelukast/Singular for the asthma and allergy. I also take a daily inhaler during the spring/summer/fall seasons in Kentucky. And I have a rescue inhaler for use when active outdoors. So, for me, the Prograf/tacrolimus was not the culprit for my shortness of breath.

I had my annual evaluation in May of this year. I mentioned a 'new' shortness of breath and light headedness. Since all my labs tests were normal, we discussed the possibility of blood pressure meds. My PCP monitors my BP and it has been under control with lisinopril and amlodipine. He suggested that I try taking the amlodipine in the evening at a lesser dose. I started in mid June and am having good results - no more lightheadedness or breathlessness when climbing stairs!.. My BP has been good.

@rselbie, Is there any possibility that your blood pressure is involved?

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Replies to "@rselbie, I want to welcome you to Connect. Am I correct to assume that you have..."

Rosemary, Thanks for the detail. As to your question about my blood pressure, mine is fine. I do take a 50 mg Cozaar tablet once a day. BP is 120/70. I don’t have asthma. I do have allergies year round. I take over-the-counter drugs like Claritin or Allegra. I don’t take them every day only when I really have an attack.
I take 1 mg tacrolimus twice a day on 12 hour cycle. I religiously adhere to the 12 hours between doses.
My pulmonologist thinks I am just deconditioned. Although I am very active, I don’t have a exercise regiment. So I’ve begun walking 30 minutes a day twice a day per his recommendation. I will wait and see if this makes any difference.
My Internet research has shown that tacrolimus can cause shortness of breath and chest pain in four out of 20 patients.
I haven’t been back to the Mayo Clinic in Jacksonville in 10 years. I have a requested appointment. Will see if face-to-face discussion with a Mayo doctor makes any headway to solve this problem.
Again thanks for the follow up.